My daughter (5) has started to have lots of 'problems' with her allergy recently.
She is refusing to eat at school, despite me providing all her food from home. She spits out her saliva into a tissue, she complains to her teacher that her throat is sore and maybe it was a peanut. Have been to doctor - no problems with throat at all. She is also upset about being 'different' to the other kids.

Does anyone have any tips for how to manage this, to help her through this?

Kathi, This is the sort of thing that breaks my heart (and I am known to be pretty hard hearted).
I'm not sure where you live but here in Ottawa, our support group had a recent speaker speak about anxiety and allergies.
Yes, we all get anxiety when purchasing foods, eating out or trying new foods.
What you are describing sounds more like an anxiety disorder in the making. You have ruled out a physical cause. Can you speak to your Dr about a referral to a psychologist? It sounds as though she has attributed schools with being unsafe to even swallow. If this is the case, there are methods to reduce anxiety and trained psychologists can give her and you techniques minimize the anxiety and relearn coping patterns. This will not go away on it's own but will become more ingrained.
I would not try to deal with this on my own for fear of inadvertently making thisng worse. That said, I would try to give her opportunities to share her feelings and maybe read some of the books on allergies that are written for children such as A Special Day at School and Alexander Goes to School and the Peanut Cafe. I point out to my daughter (almost 6) that everyone has something. I wear glasses, some people use canes or wheelchairs. We once saw a lady at a food court test her blood sugar and then inject herself-my daughter was sure glad she doesn't have to do that every day!
I hope you are able to get your little one some help, and I hope too that she has a worry-free summer!

I agree with all that Susan has said. It does sound like seeking professional help would be a really good idea.

I would just make sure that that professional is familiar with anaphylaxis and the fact that some anxiety is normal and perhaps even essential to help the family and/or individual stay vigilant. But this much anxiety is obviously not normal, and it's obviously affecting her quality of life.

Has she had a reaction recently - even a mild one? Often that makes even adults with allergies more fearful. (That throat tightening feeling can be caused by anxiety.) In adults, that kind of fear will usually subsides.

My son (10 years old now, 6 years old then) had a lot of anxiety after he had a reaction at school, and it was difficult to find any help for him as most groups that deal with childhood anxiety, deal with kids who have unreasonable anxiety, and our kid's anxiety is reasonable and functional, so it needs to be dealt with differently. (any councillors, psychiatrists, mental health professionals, pyschologists out there reading this: HELP! this is a very underserviced group!!!!!!! We really need help for our kids!!!!)

Over time (about a year or two) his anxiety lessened and he is a better kid for it, as he is much better at looking after himself - he never forgets his epipen (I do - all the time ), so there is a big silver lining.

In hindsight I am glad that he went through the experience, even though it was one of the worst experiences of our lives, I am hopeful that the fear that was created will be useful to him in keeping him safe during his teen years - he was a wreckless little guy and he never went to daycare or pre-school (I opened a family daycare mostly cos I was too scared to send him to a daycare or pre-school cos of his allergies). In grade one he told me he was sharing snacks and that I worried too much (he thought I was out to ruin his fun and independance), and that he didn't think he had a peanut allergy. One day he ate an almond another kid gave him right in front of me! I talked to his teacher, but he was sharing at recess and there was 2 supervision aides looking after 500 kids, so there was not much the school could do. I talked myself blue in the face to him, trying to get him to understand the seriousness of his allergy, but he did not remember reacting (his previous reaction was at 3 1/2), and he REALLY did not want to be different from all the other kids. So I mostly prayed and worried and waited for the inevitable. Anyway, one morning the call came and he had taken a bite out of a peanut butter granola bar (he and his friend had tried to read it, but their confidence outweighed their ability!). The school secretary gave him his Epipen, and the ambulance was there in 6 minutes, and my husband was there before the ambulance, and I got there ASAP too, and he was fine. But he had a hard time with his emotions. At the hospital he was angry he had been wrong, and even told me he had done it on purpose. I was a mess, and he was guilty, and like a few males I know, when he feels guilty he gets angry.

Over the next few weeks, he started to be fearful, which was totally opposite of what he had been. He questioned me endlessly if I had checked ingredients, wouldn't go to birthday parties, cried about going to school, etc. It was very difficult for all of us, cos it felt like the allergy was robbing him of his childhood, and even though he had been so wild and wreckless, I had always admired that part of him (even when he was making me crazy with his disobedience), cos I had always been a shy, obedient child and it had got me nowhere in life, so I really admired and respected his ability to be strong with adults, even when the adult was me.

The things I did that worked well were: I was really patient with him and I tried never to show how frustrating his endless qustions were (cos most of the time I felt like saying "Listen, you little twit, I've been keeping you safe all these years, it's YOU who screwed up with your 6 year old know-it-allness, so quit asking me 8 times what's in your dinner!), I went with him everywhere he needed me to go and didn't push him into new situations for a while. I tried to talk to him about it a lot, and he has a friend who also has allergies, and I really encouraged that relationship, so they could deal with their sense of being different with each other, and help each other.

I wrote him a book, you can change this one so you can make it something your daughter will relate too. You can illustrate it or you could do it with your daughter. I just did little stick figures.

This is how the book goes.

Hi! My name is Aaron. I am 8 years old.

I have a serious food allergy to peanuts. It is called anaphylaxis. If I eat peanut, I have to use my Epipen and go to the hospital.

It is scary to have anaphylaxis. The last time I had a reaction I was 6 years old. Before that, I wasn't really scared. I didn't understand why I had to be so careful with food. My friends at school all shared that snacks and I wasn't allowed to. I thought my Mom worried too much. One day, I shared my friend's snack. BIG mistake! It had peanuts in it.

After that, I was too scared. I was afraid to eat. I was afraid to go to my firends house. I would not go to birthday parties. My parents took me to a special doctor. He works with kids who are afraid or worried. Being too worried or afraid is called anxiety.

The doctor said that for me, some anxiety is good 'cos it keeps me safe. It is what helps me to follow the rules and remember my Epipen. Too much anxiety is not good. It stops me from having fun and doing all the things I enjoy, like playing sports and going to new places.

I try to be like the book "Goldilocks and the 3 Bears", and keep my anxiety "just right", not too little and not too much.

If I have too much anxiety there are things I can do to help myself. (Picture of Aaron with a thought bubble that says "Here comes Super Aaron to help himself" and picture that looks remarkably like Epiman flying to the rescue!)

I can be a thought detective. (Picture of Aaron with thought bubble that says - A new food - OH NO! then in point form * I can ask Mom if she checked the label * I can read the label * I have my Epipen * I have only had 3 reactions in my whole life - thats about 1 every 1,000 days)

I can help my body to relax. (picture of stickman Aaron with thought bubble that says: squeeze my toes, then relax, sqeeze my feet, then relax, squeeze my legs then relax...)

I can talk to my friend who has food allergies like me.

Having anaphylaxis is hard. I try to remember that I am brave and smart. I know what to do to make it easier.

The End.

I hope this helps. One book that helped a lot was called Taming the Worry Dragons. The way the little story is written is loosely based on the work of Carol Gray, who came up with the concept of "social stories" to directly teach children with autism what to do in social situations. One resource that is great is Odin books in Vancouver. They have all sorts of books and resources to help kids and adults deal with mental issues. I think they are on line, too.

I hope this helps, and I hope that soon mental health professionals will realize how anxious these kids are and come up with a program to help them.

Hey Pamela - that is a fantastic post with a ton of helpful info. Thank you so much! I was laughing (in particular at the "you little twit" part) and then almost in tears... two thumbs up.

I feel so grateful that my kids are not rebels (at least not with their allergies). I can see how much more challenging it can make things for parents.

I would love to see your book with pictures...!! I have also done a little book for my youngest to explain his allergies to his classmates - it's not about anxiety but it's making me think we should all get together and post our books online so that everyone can see them. I know there are other home-made books out there.

Anyway, I can see your post being extremely helpful to other parents who are experiencing what you have been through. I know that there are families in my group going through the exact same thing and it is so heartbreaking and challenging.

We had a psychologist who specializes in anxiety and trauma come and talk to our support group last week. While she doesn't specialize in anaphylaxis she does have adult and teen patients who have anxiety because of ana or asthma. She was very helpful, and she also said that she learned a lot in preparing for her talk for us.

So one thing that we can all do to start getting the word out is to ask a psychologist to come speak to our local support group. They may not know about anaphylaxis at the beginning, but by the end of the evening they certainly do know a bit more.

Pamela,
thanks for sharing your experience and also the fantastic book you wrote for your son.

Gwentheeditor,
she did have a mild reaction to something I gave her - which she had had before and been fine with. She doesnt like to eat at all when we are out anywhere at present. She is also getting more fussy about what she is eating at home.

I actually put in a call to her allergist today - am waiting to hear back from her.

Am trying to find someone to help her manage her anxiety, and give me tips to help her as well.

she did have a mild reaction to something I gave her - which she had had before and been fine with.

No wonder your poor little girl is stressed - that is hard. You think something's safe to eat, and then it's not. Even as an adult - I've had a similar experience - it makes you question (for a time) whether anything is safe to eat.

I'm glad you're getting in to see the allergist. Meantime, I like Pam's approach with her son:
- If your daughter hasn't had that many reactions, tell her that 5 years x 365 = 1,825 days. And in that whole time, she's only had X reactions. That should be reassuring.
- She's got her EpiPen if she needs it. It will protect her so she will be safe.
- Also, I've found during periods of the worst food stress that it's best to eat "for survival/nutrition". By that I mean, it's not the time to try out new stuff or expect to be able to eat big portions. I'd just stick to the tried and safe until she's able to get past most of this stress. And again, I really hope the allergist can help you with more coping strategies.

My daughter did really well today with eating at school. I wrote in the schools thread about the class party. What was a situation that could have made her anxiety worse, instead seems to have had a more positive effect. I think the fact that I was there and could assure her she was ok to eat the things at her table helped a great deal.

We see the allergist next week and I also have found a psychologist who has worked with another child like her. We see her the week after next.

So poud of your little one Kathi!
Glad that her last day of school was so positive.
I hope the psychologist will be able to give you some ideas on how to alleviate the anxiety.
It is scary when a previously concidered "safe" food is now unsafe. It throws your whole world off kilter.

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